Anyone cruise with Fibromyalgia?

Hi,

Please excuse my cross-post. I posted a similar message on the general board, and someone suggested that I post it on the disabled thread.

I'm hesitant to post here, since I know many of you have much more major issues to deal with--and my heart goes out to you! <hugs>

But here's my question: I'll be going on my first cruise (to Alaska), and I have a mild case of Fibromyalgia. Other than common sense things (bring necessary meds, get enough rest, etc.), any hints from "fibromites" on taking a cruise and steps you took to make your cruise extra-comfy for you? (Like request a foam mattress pad for your bed, etc.)

Thanks,

dsal

Fibro is such a wide-ranging condition. If you know what tends to trigger it for you, take steps to avoid the triggers.

I agree with you that a lot of rest is in order. If you have a particular pillow that helps you get comfortable, bring that with you if you can.

When you book excursions, look for ones that meet your needs as far as activity level.

Hopefully others will have more tips for you. Enjoy your cruise!

I do not have a diagnosis of fibromylasia, but I used to get what I call travel migraines that would put me out of commission. My doc advised being more proactive and medicating before flying. I take naproxin 4 days out and do great. Also pack light as heavy bags=pain.

I have fibro. and RA and have sailed many times.

I have had no issues at anytime except with mattress being too soft. Yes-sounds weird but too soft kills me.

I just learned to pace myself and go to cabin to rest.

The one thing is we always did Caribbean and Mexico. Cold weather just kills me..you are doing Alaska ??? Just be smart and have a great time.

If you're flying to the port, you might want to arrange for wheelchair assistance at the ariport and at the pier. Reason being is that it might be a long day and by the time you get to the port you may be fatigued, and you want to avoid standing in long lines as much as possible. You don't have to be unable to walk to request a wheelchair for boarding or disembarkation -- people who have fatigue issues use them too. And you may want to come in a day early and overnight at a hotel. Just to make sure you don't overdo it.

Have fun,

Candy

My mother has fibro and I would love to hear more from cruisers that also have it. She can't stand cold, even southeast winters put her in extreme pain at times. She loves going to Florida and says she feels so much better down there. I have been trying to convince her to try cruising with me. She loves the duty free gifts I bring back for her and likes to go over my pictures but she is hesitant to set her foot on the boat. Any suggestions that might help me assure her that she can handle cruising would be awesome. Thanks!

On our Alaska cruise, I got cold, so I ached. I did not take warm enough shoes for the dining room. It gets cold in there. Cute dress shoes with open toes, no hose..so my feet were cold. Layer your clothing so as it warms up you can take off layers. Also if sea sickness is a problem, make sure you ask your dr. what over the counter meds to take. I found my neck and shoulders hurt after a long day of sightseeing..duh camera hanging around my neck..

Gloves, a scarf, and yes a dorky knit cap helped a lot when on the balcony viewing the glaciers.

I just took a nap in the afternoon before dinner on sea days. Port days I just rested when I could. Also I limit my alcohol intake and make sure I stay hydrated.

If you think you might need an eggcrate for the bed, ask right away as they only have a limited supply and run out fast. Or call the cruise line special needs and ask for one ahead of time.

You will love Alaska.

Connie

Hi,

I have fibro and sjogren's syndrome and have cruised many times. I just pace myself and take naps when I can. I do ask for an egg crate mattress pad and this helps. I also bring lots of disposable thermal neck and back pads and they help (especially at night when it gets a little cool). One thing I do have difficulty with is the shower - no bars in it and I have fallen when the ship was moving but didn't hurt myself (other than a few bruises). Have fun and relax.

I have chronic pain and went on my first cruise last summer. Southeast Alaska is a temperate rainforest. Of the 3 days in port in Alaska it rained 2.5 days. Our day in Ketchikan was miserable (45 degrees, raining and windy). We had an outdoor excursion and everyone agreed afterward we should have just skipped it. Plan for cold rain. Bring a good raincoat and waterproof pants (all the seats are wet). Wear plenty of layers and pack warm cloths. Of course I know someone who went on the same cruise and it was sunny and 80 degrees the whole time. Some people have all the luck.

DH and I returned from our first cruise March 28, 2010. I have RA, OA and Fibro. My only real issue was getting so wore out and tired. Next cruise, I will be much more pro-active in getting enough rest! But, dang, it was fun!

i dont have fibro, but a very good friend of mine does. She has food triggers, and one issue is with salty foods causing water retention that causes more pain because of the edema. The foods are heavily salted so you might get in touch with special needs and arrange a low salt diet if that is a trigger for you. Also, if some other food or food group is a trigger, talk it over with your waitstaff so you can figure out what to eat =)

Wow good suggestions! My first cruise is next January to Mexico. I have fibro and will make sure to order an eggcrate thing for my bed. I'm wondering if I should bring a sweatshirt and/or sweater just in case the main dinning room is freezing.

Does anyone know if there is an in-cabin refridgerator/freezer that you can bring a cold/gel pack and store in your room - and if so how big is it? Is it like what you find in a hotel room? I'll be on RCL Mariner of the Seas.

I have both fibromyalgia and chronic fatigue syndrome, and, as you can see from my sig line below, I cruise quite a bit.

I live in a cool climate, so that does not tend to trigger flares (heat does it for me, that's why I moved up here from the desert southwest).

When DD and I are in Alaska, we tend to walk for miles (after seven trips, we don't do shore ex any more, just whatever we feel like at the moment). Since I have a tendency to have fatigue hangover after that, I am renting a mobility scooter this year, so that I can keep up with her and still have some energy left at the end of the day. Egg crate mattress is a must if you are sailing on one of the lines famous for hard beds.

Have a great time.

I also have Fibro along with other conditions--I take naps in the afternoon and I also bring a wrap as the dining rooms are chilly--as well as other public rooms. I keep my activities light enjoy every cruise. Be sure to remember your meds if on any. Relax and have a wonderful time.

I have fibro and SS. For me flares come on with extended plane flights. I found I am better off not flying direct from Europe to Hawaii or other crazy schedules that take months to recover from.

I also avoid getting cold

flush sinuses

and stay gluten free

I agree with the suggestions above. You know what triggers your flare ups better than any of us do. I know it's difficult to avoid the triggers, especially with so much of a change from your regular routine, but just remember to not push yourself. There's no sense going overboard the 1st day then being in pain the other 6.

For me, we're flying down the day before so we can recoup frome the 9 hour flight. We're going to keep the walking to a minimum and sit and rest whenever the opportunity arises. My biggest triggers are walking, stress and change in weather.

Enjoy the spa. Enjoy the beauty of your surroundings. Relax and remember that going slow and steady will win the race. :)

I have fibro and chronic fatigue and cruise quite a bit. I purchased a mobility scooter second hand after renting one (very expensive if you cruise often) for the cruise ship and it's been a lifesaver even though I'm able to walk (it's the distances that wear me out). If you're interested in renting a mobility scooter (and they're very easy to use), carevacations.com is wonderful. They have the scooter waiting for you in your cabin and pick it up from there when the cruise is over. I also bring a heating pad with an extension cord which feels wonderful when you're in bed napping or resting. Lots of pain relievers and sometimes muscle relaxers have also helped.

Have a wonderful cruise. I'ts my favorite form of vacation.

Hi,

 

Please excuse my cross-post. I posted a similar message on the general board, and someone suggested that I post it on the disabled thread.

 

I'm hesitant to post here, since I know many of you have much more major issues to deal with--and my heart goes out to you! <hugs>

 

But here's my question: I'll be going on my first cruise (to Alaska), and I have a mild case of Fibromyalgia. Other than common sense things (bring necessary meds, get enough rest, etc.), any hints from "fibromites" on taking a cruise and steps you took to make your cruise extra-comfy for you? (Like request a foam mattress pad for your bed, etc.)

 

Thanks,

dsal

Fibromyalgia is a major health issue to many. It can put us completely on bedrest. I have fibro in addition to OA and a cardiac condition plus asthma and migraine. If I get overtired, I know I am in trouble. I try to pace myself and give myself time to rest in the late afternoons. I also know I will get migraines from second hand smoke and need to try to avoid it, which is sometimes very hard if you walk even near the casino or certain bars.

I make sure I take my meds on time and have plenty of pain meds with me. I avoid loud noises too many hours in a row, or bright flashing lights. I try to avoid foods that I know will trigger a flare (wine, cheeses, some nuts)

I have found I do better on a 5 day cruise. On a 7 day, I am exhausted on day 6 & 7 no matter what I have tried to do right.

Cold makes me feel worse than heat. I make sure to have a sweater on in the main areas of the ship. In Alaska, I would have to have warm items for my feet and hands.

I haven't had a real problem sleeping on ship beds because I don't sleep well anywhere

I do think having a cold pack in a cooler and asking for ice is a good idea. It helps my muscle spasms and so does a warm shower. I also take a roll on pain gel, like Biofreeze with me. Comfortable shoes are a must. No heels for me. Make sure your mate or friends know you may miss some activities. Learn to say "Maybe later but not right now."

Good luck. It is very hard because we look healthy.

I have Fibro and hashimoto's disease phrase 4 degeneration in my neck as well as 3 other spots in my spine as well as a few other things. I love to cruise as it is the one vacation that fits me. Heat is worse for me than the cold so I have to watch the heat in the Carib. I try to take my own pillows (one for my head and one for between my legs) as well as the usually medicines. I have to follow a specific diet or face a variety of problems. Carnival was wonderful in making sure that I had it. I get migraines and have lung problems with smoke so avoid the areas that they are allowed. We have our own balcony so that I can have a quiet time laying out without any of the problems. I can walk but not for long. Waiting in lines are very hard for me, my back and legs give out and I am in really bad pain. I have a 2 hr. nap every afternoon so excursions are really looked at. If I do one that is at the time of my nap I have to try and nap or rest on the drive there. I do miss out on some things on the excursion but I get to see other things. I take what I can get. On my 1st cruise I didn't realize that my diet was so important and ended up getting a bad migraine while on an excursion. I ended up fainting. What I did find out is that if I wanted to be on the ship I need to faint on the ship or at least the gangplank. Which is what I did. Thank goodness. Enjoy your cruise it is the best vacation you can have..

tigercat

what would have happened if you fainted off the ship?

I'm having a really bad bout of it right now. Been coming on for days but i just spent about 5 hours shopping today which was the last thing i should have done. When we got home, i just sat there in the van feeling like all the will power in the world was not going to move my limbs even an inch :(

I pray that none of us have a bad flare up while we're cruising. happy cruising :)

I would have been left on the Big Island and would have had to catch up to the ship. As it was they took me to the infirmary (sp) and they gave me an IV to help with liquids and some medicine for the migraine. I then took it really easy that day and the next. A lot of people saw me and stopped me to ask if I was okay. Since I was not "with it" when I fainted I didn't realize how many people saw me go down. The migraine had been building the whole excursion so when we got back we were in a long line to get back on the ship. I remember grabbing my husband and telling him that I didn't care what he did but I needed to be on the ship NOW. He hauled me up the other side of the gang plank (the leaving the ship side) and was telling them that I needed on the ship NOW and down I went. He said that they were really great getting me in a wheelchair and taking me VIP onto the ship. Sorry I just had to use the VIP excuse. The Dr's and nurses were apparently really nice. I don't remember much of that part of it. My husband told me he was happy with how I was treated. Funny thing is though that at the end of the cruise we stayed 3 extra days and again the last day I had a migraine. I tried to tell my husband how bad I felt and that I didn't really think I should get on the plane but he didn't listen. We got on the plane but I told him later that he was never to do that to me again.

tigercat

I am looking forward to my first cruise as well, so I've appreciated these suggestions also. I have a few diseases/medical complications that I have learned to travel with, so I can share some fibro tips as well...

As others have mentioned I work hard to regulate my temperature. If I am feeling cold the Thermacare heat wraps have been a lifesaver in helping me deal with pain. If I become over-heated (some meds cause this also) I use a little stick made by Vichy called Ice Effect. You can even put it in the fridge to make it cooler. You can keep it in your purse when on excursions and roll it over your cheeks and the back of your neck for a cooling feeling.

Magellans travel company supplies also makes these bandanas that you can run under cold water in the morning and they stay cold all day and you can wear them around your neck. (They make a hat that does the same thing).

Because sleep can be challenging I always bring ear plugs. And, our ipods filled with relaxing music and even some white noise downloaded (there is scientific evidence that white noise reduces pain).

I make sure to drink Gatorade or bring electrolyte replacing powder or tablets. A lot of Fibro sufferers have problems with digestive issues or fainting because of electrolyte imbalances and this only gets worse when we are overextending ourselves.

I use a glucosamine cream that absorbs quickly because the emulsifying agent is emu oil. (My DH found it for me, I am so thankful to him!)

I hope you have a wonderful cruise!!!!

I am 48 years old nd this will be our 2nd cruise I am really really looking forward to this becaue I will be relaxing, no muscle spasm, no aching. And I will be doing my OWN PACE. I do plan to bring the heating pad for backup plan and also pain medications too. I do plan to day extra day off before take off body can rest before heading to the airport. My main concern will be on the way home as we will not be home till midnight but again I wil have my backup buddies with me (medications goodies:D) if needed. I also will be taking extra days off too from cruise.

One thing I can tell you last time when I was on the cruise boy that was first time in a long time body had no aches no pain. Felt free . That is why I am looking forward to this.

Alaksa cruisers, thanks for the thumbs up. we talked about that for our 30 years anniversary. I can see need extra protection. My body does not do well at all on air conditonrs or any cool climate and windy days.

I also learned about eggcrate mattress , would look that up. WHen we were on Freedom of the Seas, that mattress was very very good, and comfortable.

We will be going on August 15. Los Angeles on AUgust 14.

Thanks for all the replies and good advice!

I've also packed some muscle braces (knee, ankle) and some of those Thermacare heat wraps. Ohh, those are wonderful! I did request an egg-crate mattress topper, so I hope Princess remembers this!

Cloudshoveller: Glucosamine cream? Do you find that helps? I've never tried that. I have tried Glucosamine tablets in the past, but didn't really notice a difference.

dsal

Thanks for all the advice! I hadn't even really thought of my fibro being an issue when we booked our first cruise for this October. Now, looking at it, it seems that I have unconciously planned around it so as to avoid one of my major triggers ... temperature swings.